Measuring stigma across neurological conditions: the development of the stigma scale for chronic illness (SSCI)
Most measures of stigma are illness specific and do not allow for comparisons across conditions. As part of a study of health-related quality of life for people with neurological disorders, our team developed an instrument to assess the stigma for people with chronic illnesses.
We based item content on literature review, responses from focus groups, and cognitive interviews. We then administered the items to people with neurological disorders for psychometric testing.
Five hundred eleven participants completed items of the stigma scale. Exploratory factor analysis produced two factors that were highly correlated (r = 0.81). Confirmatory factor analysis produced high standardized loadings on an overall stigma factor (0.68–0.94), with poorer loadings on the two sub-domains (−0.12 to 0.53). These results demonstrated a sufficiently unidimensional scale that corresponded with the bifactor model. Item response theory modeling suggested good model fit, and differential item functioning analyses indicated that the 24-item scale showed potential for measurement equivalence across conditions.
Our efforts produced a stigma scale that had promising psychometric properties. Further study can provide additional information about the SSCI and its benefit in measuring the impact of stigma across conditions.
KeywordsNeurological disorders Measurement Chronic illness Self stigma Enacted stigma
This study was funded by the National Institute of Neurological Disorders and Stroke (NINDS) contract number HHSN265200423601C. Deepa Rao is supported by a career development award funded by the National Institute of Mental Health (NIMH: grant number K23 MH 084551). The authors would like to thank the assistance of Claudia S. Moy in making this study possible, also Paul K. Crane for his psychometric guidance, and Patrick W. Corrigan and Nicolas Rüsch for providing comments on earlier drafts of this paper.
- 1.Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. New York: Simon and Schuster, Inc.Google Scholar
- 4.Jones, E., Farina, A., Hastorf, A., Markus, H., Miller, D., & Scott, R. (1984). Social stigma the psychology of marked relationships. New York: W.H. Freeman and Company.Google Scholar
- 7.Sirey, J. A., Bruce, M. L., Alexopoulos, G. S., Perlick, D. A., Friedman, S. J., & Meyers, B. S. (2001). Stigma as a barrier to recovery: Perceived stigma and patient-rated severity of illness as predictors of antidepressant drug adherence. Psychiatric Services (Washington, D.C.), 52(12), 1615–1620. doi: 10.1176/appi.ps.52.12.1615.Google Scholar
- 22.Corbin, J., & Strauss, A. (2008). Basics of qualitative research. Los Angeles: Sage.Google Scholar
- 23.Lawrence, J., Fauerbach, J., Heinberg, L., Doctor, M., & Thombs, D. (2006). The reliability and validity of the perceived stigmatization questionnaire (PSQ) and the social comfort questionnaire (SCQ) among an adult burn survivor sample. Psychological Assessment, 18(1), 106–111. doi: 10.1037/1040-35188.8.131.52.PubMedCrossRefGoogle Scholar
- 27.Green, C., Kiebert, G., Murphy, C., Mitchell, J., O′Brien, M., & Burrell, A. (2003). Patients’ health-related quality of life and health state values for motor neurone disease/amyotrophic lateral sclerosis. Quality of Life Research, 12, 565–574. doi: 10.1023/A:1025052609818.PubMedCrossRefGoogle Scholar
- 32.Willis, G. B. (1999). Cognitive interviewing: A “how to” guide, from the short course “reducing survey error through research on the cognitive and decision processes in surveys”. Presented at: Meeting of the American Statistical Association; Dallas, TX, USA.Google Scholar
- 33.Ryan, G., & Bernard, H. (2000). Data management and analysis methods. In N. Denzin & Y. Lincoln (Eds.), Handbook of qualitative research. Thousand Oaks, CA: Sage Publications.Google Scholar
- 34.Samejima, F. (1969). Estimation of latent ability using a response pattern of graded scores. Psychometrika Monograph, No. 17.Google Scholar
- 37.Alonso, J., Buron, A., Bruffaerts, R., He, Y., Posada-Villa, J., Lepine, J. P., et al. (2008). Association of perceived stigma and mood and anxiety disorders: Results from the World Mental Health Surveys. Acta Psychiatrica Scandinavica, 118(4), 305–314. doi: 10.1111/j.1600-0447.2008.01241.x.PubMedCrossRefGoogle Scholar
- 40.Hambleton, R. K., Swaminathan, H., & Rogers, H. J. (1992). Fundamentals of item response theory. Newbury Park, CA: SageGoogle Scholar
- 42.Perez, L., Huang, J., Jansky, L., Nowinski, C., Victorson, D., Peterman, A., et al. (2007). Using focus groups to inform the Neuro-QOL measurement tool: Exploring patient-centered, health-related quality of life concepts across neurological conditions. The Journal of Neuroscience Nursing, 39(6), 342–353. doi: 10.1097/01376517-200712000-00005.PubMedCrossRefGoogle Scholar
- 45.McDonald, R. P. (1999). Test theory: A unified treatment. Mahwah, NJ: Lawrence Erlbaum.Google Scholar